International ME/CFS Awareness Day was originated by Tom Hennessy, an ME patient and staunch advocate who testified at numerous national and international ME/CFS conferences and meetings. Tom chose May 12th as ME/CFS Awareness Day to commemorate the birth of the famous nurse, Florence Nightingale, who suffered from an ME/CFS-like illness. May 12 is also International Nurses Day.

Over the years May 12 has been expanded to include other neuro-immune illnesses that share many of the features of ME/CFS. At present May 12 includes Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). All of these illnesses employ May 12 as an opportunity to raise public awareness, to contact representatives for more research, and to promote fund-raising activities.

Although it is not formally recognized in the US, International ME/CFS and FM Awareness Day is observed worldwide.

Simple things you can do:

Wear a blue ribbon for ME/CFS, a purple ribbon for FM, or a green ribbon for Lyme disease and MCS.

Tweet on May 12. Add #may12th to your tweet.

If you have a blog or a Facebook page, post something. It can be as simple as an awareness image.

If you have some spare cash, donate to research efforts. Open Medicine Foundation is raising money for their End ME/CFS Project.

INTERNATIONAL

Light Up the Night Challenge. “The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue (ME/CFS), purple (FM) or green (Lyme and MCS). We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!” See the Facebook page HERE.

#May12BlogBomb is back! May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions. Blog bomb information is HERE.

Google – Create a Doodle. Every year the doodlers ask Google to create a doodle. This year they are also supporting other events and activities. Please go to their Facebook page HERE.

One week about ME on social media This is where people with ME are asked to share one picture a day about their ME during ME awareness week. Each day has a specific photo topic: smile for ME, your favourite low level activity, something which makes you feel better, get creative with spoons, something you're preparing for, a hand written message to fellow spoonies, you on a good day. There are also a topic to write about each day alongside your photo for example "I wish people without ME would..." The photos are to be shared on social media using the hashtag #1weekaboutME.

The #Millionsmissing protest is being organized by ME Action to draw attention to the plight of millions of people with ME/CFS. There are several things you can do to participate in #Milllionsmissing that do not require leaving your home.

1. You can send your shoes to Washington DC.

ME Action is asking patients who are unable to make it to the physical protest locations to please donate one pair of shoes. They will display them at the Washington, DC protest. You can send a pair of old shoes or if it’s difficult to get to the post office, order shoes on Amazon or Ebay and have them shipped directly. During the protest, images of these shoes will be posted to #MEAction’s social media account using the #MillionsMissing hashtag, so patients can see that they are being represented during the demonstration. Shoes cannot be returned. After the protest, they will be donated to a local charity or kept for a future installation.

Fill out this form and and then mail your shoes to: Paige Maxon, P.O. Box 26051, Winston Salem, NC 27114. All shoes must be postmarked by May 10th, 2016!

Send your shoes to London

You can also send shoes to the London protest. Fill out this UK form and mail to: LA Cooper, 25 Grassmead, Thatcham, Berkshire, RG19 4FP (UK)

Better yet – send to BOTH locations

2. You can also put a pair of shoes at the end of your driveway or your doorstep.

On May 25th, take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media #MillionsMissing. Anyone can participate. You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: “I cannot walk to the end of my driveway” or “My brother should be here.”

3. Use social media

On May 25th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the protest. Use the hashtag: #MillionsMissing so that we can aggregate all the photos. You can use #MEAction #mecfs #pwme to help identify your post.

You can hold your own #Missingmillions protest sign with a slogan in your photo. Here are a few examples to get started:

Help raise funds for OMF's End ME/CFS Project! WHY UNDIES ON THE OUTSIDE? Because superheroes wear their undies on the outside, and you have to be a superhero to live with this disease! Wearing underwear on the outside symbolizes bringing an invisible illness, which is usually hidden away, out into the open.

AUSTRALIA

The Do Something for ME project is designed to raise awareness in the general community about ME/CFS and to raise funds to support Emerge Australia to continue its work advocating for, educating about and providing information on the condition.

IRELAND

Walk for ME is a 5 km Charity Walk to raise Awareness and Funding for biomedical research into M.E. (Myalgic Encephalomyelitis) at the beautiful Belevedere House & Gardens. All proceeds going directly to the charity "Invest In ME" for biomedical research into M.E. “We're not strict on people finishing the full 5 km, if they're not able. A person can undertake any amount of distance.” For more information go HERE.

The Irish ME/CFS Association is pleased to announce that it has arranged for four free screenings of the documentary on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Forgotten Plague, in various venues around Ireland during May, ME/CFS Awareness Month:

- Limerick: South Court Hotel. Thurs, May 5. 11:30 AM.

- Galway: Maldron Hotel, Headford Road. Thurs, May 12. 7.30pm

- Dundalk: An Táin Theatre, Crowe Street. Tues, May 17. 2 PM.

- Dublin: Crowne Plaza Dublin Blanchardstown. Sunday, May 29. 3 PM.

These are the first public screenings of the documentary in Ireland.

All are welcome. Further details are available on the Association’s website www.irishmecfs.org.

Be a part of the #MillionsMissing international day of protest, by attending #MillionsMissing UK, either physically or virtually. Come stand for the millions of severely ill patients living with this ME/CFS who are missing out on every day life. Whether you’re a patient, healthy ally or someone just learning of this disease, everyone is welcome to join in the fight for more funding for research and education.

To be at the protest in London, we suggest you bring a blanket, pillow, mobility scooter, or wheelchair to be as comfortable as possible. Consider wearing duct tape, with #MillionsMissing written across to represent this silent epidemic.

Email L.A. Cooper with any questions at info@changeformechangeforus.co.uk

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Blue Sunday

When: May 15

Where: UK

Blue Sunday is an event which has been going on for several years. Anna, the organiser invites you to have a coffee morning with your friends and family in aid of the ME Association. Guests are asked to bring the amount of money they would normally expect to pay for tea and cake as a donation. You can also take part in the national movement online, by joining in virtually! Here is a link to a blog post where Anna talks about the event in more detail, and here is a link to the online event, for those who are unable to attend an event or host their own. Here is a fundraising page, where you can join the team, or donate to a member of the team! You can read about the history of the event here.

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Go blue for ME

This is organized by the ME Association, as blue is the color for ME awareness the public are encouraged to dress up in blue, or do something related to the color blue for ME awareness day which is the 12th of may, or for ME awareness week which is the 9th-15th of May. Share your blue antics on social media using the hashtags #GoBLUEME, #MEawareness or #MEawarenessweek! See the image below for more details.​

On May 25, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services to implement the following list of demands.

Our goal is to give the 1 to 2.5 million[i] disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.

Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.​For ME/CFS patients and their families, we demand:

Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

1. Funding and Program Investments Commensurate with the Disease Burden

The NIH must dedicate funding and program investments for ME/CFS commensurate with the disease burden, and they must do this without continued delay, as patients have already been waiting three decades.

Rationale

Thirty years of neglect by the NIH, combined with a stigma toward this disease, has resulted in insufficient and erroneous research as well as uninvolved academic researchers and pharmaceutical companies. To address these problems, and save lives, the NIH must immediately implement an aggressive set of investments to substantially ramp up its funding and program commitments over the next 3-5 years.

Details

To finally have NIH funding and investments commensurate with disease burden, our demand is to increase the paltry $7M per year currently allotted to ME/CFS to the more equitable amount of $250M. This new program of investments must be developed and executed in collaboration with ME research experts, clinicians and patients, and must include:

Funding five regional ME/CFS Centers of Excellence, each with a research/clinical trial component and also a clinical care component to address the current crisis.

Funding multiple requests for applications (RFAs) for ME/CFS over the next three years, for a total of $10M the first year, $20M the second year and $25M the third year.

A significant increase in funding for investigator-initiated extramural research (including hypothesis-generating research), as well as a commitment of intramural staff focused on ME research.

Funding a research network that will collaborate in the development and execution of an ME/CFS research strategy.

Funding an outreach plan to engage major academic centers and pharmaceutical and biotech companies in ME/CFS research and drug development.

2. Clinical Trials to Secure Medical Treatments for ME/CFS

HHS must fund and incentivize ME/CFS clinical trials to secure medical treatments for ME/CFS. This must be done with great haste, as patients are missing out on their lives and losing their lives to this disease.

Rationale

After thirty years, there is still not one Food and Drug Administration (FDA)-approved medication for the disease. An estimated one-quarter of ME/CFS patients are severely ill, meaning at least two hundred and fifty thousand patients are unable to leave their homes or bed, many for decades. With no FDA-approved treatments available to them, they have little hope of ever improving. To address this situation, HHS must fund and incentivize clinical trials in the following manner:

Details

We demand the NIH immediately partner with the FDA to address the key obstacles to moving clinical trials forward. NIH must also actively incentivize pharmaceutical and biotech industries so that at least five accelerated clinical trials of medications are conducted over the next five years. The goal must be getting at least two FDA-approved medications on the market for ME/CFS patients in the next five years. Proposed medications include Ampligen, Rituxan and antiviral medications, all drugs that have been in trials already and have been successfully used to treat ME/CFS patients.

The clinical trials must include severely ill, homebound patients, and must be overseen by an advisory team of ME/CFS specialists and researchers who best know the needs of this patient population.

3. Accurate Medical Education and Clinical Guidelines

The Centers for Disease Control and Prevention (CDC) must immediately discard its erroneous and outdated information related to ME/CFS and replace it with accurate medical education and clinical guidelines. The guidelines must be based on the most recent scientific information and the practices of ME/CFS experts, and be preapproved by a panel of recognized disease experts.

Rationale

It is morally reprehensible and medically unethical for the CDC to continue to disseminate erroneous and outdated information that can hurt patients. In spite of the findings of the 2015 Institute of Medicine (IOM) report, the CDC still includes references to psychological theories and treatments, such as GET (graded exercise therapy) and CBT (cognitive behavior therapy), even though the IOM report discredits the idea that this disease is psychological. This perpetuates medical confusion and puts ME/CFS patients at significant risk of harm. To address this situation, the CDC must immediately issue new ME/CFS medical education and clinical guidelines in the following manner:

Details

The CDC must immediately revise their ME/CFS medical education and clinical guidelines to replace erroneous and outdated information with updated, correct information based on the 2014 IACFS/ME Primer, and the IOM report, supplemented with the August 2015 recommendations from the CFS Advisory Committee. The IOM report stated that ME/CFS is not a psychological disease, yet much of the influential research on ME/CFS has focused on psychological factors. A 2015 NIH Pathways to Prevention (P2P) Report called for the retirement of the Oxford case definition because it is overly broad and includes people with other conditions including mental illness. Yet findings using the Oxford case definition are still being referenced in CDC material, even in new medical education information from the CDC and other medical education providers. This encourages an unethical focus on psychological factors and treatments, such as GET and CBT.

All medical education content must be approved by recognized ME/CFS expert clinicians, researchers and patients before publication.

The CDC must actively reach out to the larger medical community and to medical education providers to disseminate this updated content while simultaneously removing the erroneous information and material.

HHS must demonstrate a serious commitment to ME/CFS commensurate with the severity and prevalence of the disease. This commitment must specifically remove all internal HHSimpediments to achieving rapid progress and must be implemented with the full and open collaboration of, and accountability to, ME/CFS experts and patients.

Rationale

HHS’s lack of leadership and commitment to ME/CFS for the past thirty years has resulted in the neglect of a serious neurological disease and the abandonment of 1 to 2.5 million disabled Americans. HHS’s neglect has stalled research and drug development; disincentivized academic centers and pharmaceutical companies; and led to disbelieving medical providers, which has, in turn, resulted in a stigmatization of patients and abysmal, often harmful, clinical care. HHS’s short-sighted policies and unilateral actions have destroyed the scientific and medical infrastructure for ME/CFS that could have advanced research and proper care for patients. HHS must now act with a commitment, focus and sense of urgency regarding all aspects of its response to this disease in order to remedy the situation, as patients are losing their lives to this disease, many having spent years, even decades, too weak to function. In doing so, HHS’s decision-making process can no longer take place behind closed doors; HHS plans for ME/CFS must be developed and executed in conjunction with those who intimately know the disease: ME/CFS experts and patients.

Details

HHS Leadership, Oversight and Commitment

To ensure rapid progress, HHS must immediately accept the CFSAC Aug. 2015 recommendation of appointing a “senior-level cross-agency leader (“czar”) with the authority, position and fiscal responsibility required to coordinate, develop, implement, and monitor a broad strategic cross-agency response to this disease through open and collaborative engagement of both internal and external stakeholders.” The plan must be fast-tracked and must include long-term goals and milestones, as well as criteria for measuring progress. The currently established Trans-NIH ME/CFS Working Group does not address these needs, as it has no coordination of a cross-agency strategic response. That response must address not only research, but also drug development, epidemiology, medical education, access and quality of medical care and public awareness.

NIH Leadership, Oversight and Commitment

Given the multi-systemic nature of ME/CFS, it is crucial that each relevant Institute within the NIH must immediately put forth its own publicly-stated strategic and financial commitments and goals. To ensure coordination across the Institutes and to make rapid progress on an NIH research strategy, the Trans-NIH ME/CFS Working Group must continue. Finally, to ensure we make fast progress in the context of the NIH’s organizational structure, ME/CFS must be assigned to an NIH Institute right away. Given ME’s clear neurological dysfunction, the disease must be placed in the National Institute of Neurological Disorders and Stroke (NINDS) as recommended by CFSAC.

CDC Leadership, Oversight and Commitment

To demonstrate their serious commitment to urgently address ME/CFS, the CDC must restore the ME/CFS budget which was eliminated in their 2017 budget justification submitted to Congress. Additionally, the CDC must provide funds to conduct epidemiological studies to reassess prevalence, prognosis and risk factors. In doing so, the CDC must use the Canadian Consensus Criteria, as does the NIH in its current intramural study. Further, the CDC must implement a mechanism to ensure that a panel of recognized disease experts are involved in final decision making on all aspects of the CDC’s efforts related to ME/CFS.

Closing Note: These demands could change if there is any new information coming from the NIH, the CDC or HHS before the date of the #MillionsMissing demonstration on May 25, 2016.

ContactTo learn more, please contactinfo@MEAction.net

###

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015. http://www.iom.edu/Reports/2015/ME-CFS.aspx

​Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015. http://www.iom.edu/Reports/2015/ME-CFS.aspx;

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015 http://www.iom.edu/Reports/2015/ME-CFS.aspx Page 1-3, 15-16, 27-31.

Ron Davis, best known for helping to spearhead the Human Genome project, posts a selfie where he’s wearing a cape and a pair of briefs over his regular clothing. Hands on hips in the manner of superheroes everywhere, Davis mugs for the camera, happy to be ridiculous – for a cause.

Davis is the Board Director at the Open Medicine Foundation, a nonprofit set up to raise funds for the research he does with a team (including three Nobel laureates) at the Stanford Genome Technology Center. The Open Medicine Foundation has raised 4 million dollars since 2012 to help combat modern illnesses with elusive etiologies and challengingly complex presentations, such as Lyme, fibromyalgia, myalgic encephalomyelitis. His interest in studying myalgic encephalomyelitis or ME/CFS is to save his son Whitney’s life.

“ME/CFS symptoms include but are not limited to severe post-exertional fatigue, sleep dysfunction, cognitive impairments, and muscle/joint pain,” explained Stacy Hodges, a 32-year-old who is an advocate and activist for awareness of her condition. “After countless doctors' appointments, many individuals with ME/CFS quickly deplete their life savings but remain unable to work. There is very little hope for a cure, due to the government's lack of commitment to the disease, which results in almost no funding dedicated to medical or scientific research.”

In a public plea in December of 2015, Davis wrote, “My son Whitney woke me this morning to inform me that he is dying. He did not say he is dying – he cannot speak. He did not write he is dying – he cannot write. He used scrabble tiles to spell out his message.”

Whitney Dafoe’s story broke into the mainstream media after Ron Davis, his wife Janet Dafoe, and their daughter Ashley Davis held fundraisers to raise money to fund Ron’s research after his grant applications to the National Institute of Health were denied. “This tells me I am running out of time,” Ron went on to say. “I must find out soon what is causing the disease and how to cure it. I know I’m not the only one working on this disease, but there are too few researchers, too few medical specialists, too little research funds and too many patients.”

An idea for a protest began to form, and Hodges started to articulate what that would look like. “Understandably, the idea of a protest was met with some initial resistance and hesitation because many patients are just way too sick to get out of bed, much less attend a protest,” said Hodges in an email interview. “The co-founders of #MEAction supported the idea of activism and together we launched the first step of many: our protest in Washington, D.C.”

As the group began planning, and posting about the protest on social media, the idea for a #MillionsMissing campaign started to form. “#MillionsMissing speaks to the invisible nature of our illness,” said Hodges. “Millions of patients are missing from their careers, schools, social lives and families due to the debilitating symptoms of this disease.” There are also millions missing in funds to research the disease, and millions of healthcare workers lacking proper medical training about ME/CFS.

On May 25th, several groups across the nation will stand (or sit in wheelchairs, lie on stretchers or the ground, depending on their severity of the disease) outside Departments of Human and Health Services to protest a lack of funding to research their disease. So far, there are protests taking place in Washington D.C., Seattle, San Francisco, Atlanta, Dallas, and London, England.

The combined efforts, fronted by Hodges, have been incredible. Many patients participate in several conference calls a week, sometimes using up their energy reserves to talk, plan, organize, and formulate the protest’s demands.

Understanding that many patients with ME/CFS won’t be able to attend the protests in person due to being house- or bed-bound, there are several virtual protest options listed on their website. People around the world can mail a pair of shoes to represent one of the millions who are missing from their once-active lives. On the day of the protest, supporters are also encouraged to place a pair of shoes on their front stoop or driveway with a sign explaining who they represent. “At the protest, we will be displaying many pairs of empty shoes sent in from sick and disabled patients around the world, many homebound and bedridden,” added Hodges. “The haunting display of empty shoes will represent the #MillionsMissing who make up our ME/CFS community.”

Hodges reached out to The Blue Ribbon Foundation, the nonprofit behind the documentary Forgotten Plague, which features the Davis-Dafoes, showing a rare glimpse into the room where Whitney has lived for over three years.

The Blue Ribbon Foundation offered a special Congressional DVD Pack through the Forgotten Plague website, and joined efforts to attend the protest in D.C.. “Real change is about engaging with the institutions in society that hold the power,” said Ryan Prior, who wrote and co-directed the film. “We need policymakers to watch a film that conveys the human struggle, scandalous politics, and world-changing science of the ME/CFS story. By using the film and the protest to build an increasingly unified front on Capitol Hill we can tell our story in a way we've never done before to the audience we need most.”

The focal point in each of these campaigns, protests, and fundraisers aligns with Ron Davis’s sentiment: a search for ‘what I can do to start a movement’.

It’s a movement towards recognition, for people to see how many people are suffering at home in dark rooms, behind closed doors, imprisoned in a body that can no longer function enough to perform daily self-care tasks. “Many patients have no caregivers at all, and they are struggling to get food in their refrigerators or just get to the doctor,” said Hodges. “Many patients are too sick to fight for themselves. Something has to be done, because the status quo is unacceptable. The patients can not live like this. I hope the public recognizes that this is a growing movement.”

It’s a movement with a groundswell of fundraising, advocacy, and groundbreaking medical research that has the potential to help ME/CFS patients find their feet.

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About the author: Stephanie Land is a writing fellow for the Center for Community Change, and a board member at the Blue Ribbon Foundation. Her work has been featured through The New York Times, The Washington Post, and The Guardian. She lives in Missoula, Mont., with her two daughters. Read more of her story at stepville.com or follow her @stepville.

Author

PLEASE HELP PEOPLE WITH CFS/ME FIND THIS WEBSITE! Click "like" on any page. Thank you!

About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.